Charlotte Parker, a 28-year-old mother from West Berkshire, faces an unimaginably difficult journey ahead. Just 11 months after giving birth to her son Jimmy, Charlotte was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a rare and fatal form of motor neurone disease. She has been given a life expectancy of two to five years. Living in Thatcham with her fiancé George, a 32-year-old mechanic, and their three children, Charlotte is now focused on creating precious memories with her young family.
During her pregnancy, Charlotte began experiencing numbness in her right hand. Initially, healthcare professionals suspected it was carpal tunnel syndrome. However, after further investigation and testing, the diagnosis was found to be far more serious. As time passed, her symptoms—like muscle weakness, twitching, and difficulty in swallowing—escalated, confirming her worst fears. She was officially diagnosed after undergoing an electromyography test in June and receiving a follow-up at the John Radcliffe Hospital in Oxford in July.
The diagnosis has been particularly challenging as Charlotte also has two other children, aged four and seven, along with her 11-month-old. The young mother works as a revenue and debt accountant and does not have life insurance. Despite the dire circumstances, she intends to continue working for as long as her condition allows.
Charlotte and George, who got engaged two years ago, plan to get married soon. Recognizing the importance of living in the moment, they recently took a holiday to Pembrokeshire to create happy memories as a family. They’re committed to celebrating what they have now rather than focusing solely on the heartbreaking prognosis.
The family has garnered community support as well. Friends and loved ones have initiated a GoFundMe campaign to raise £15,000, aiming to send Charlotte and her family to Disneyland in Paris. They have already raised over £11,000 towards their goal. While the medical community cannot definitively say how quickly Charlotte’s ALS will progress, she remains steadfast in her goal to make the most of her remaining time with her family.
“It’s just going to deteriorate pretty quickly,” Charlotte acknowledges. But she refuses to let the disease define her or her family’s experience, emphasizing the need to “capture those memories” for the sake of her children, so that they know she was there with them, living life to its fullest, for as long as she could.
